“In the chapter, Illegal, Immoral, and Deplorable, it talks about a virologist named Dr. Chester Southam, and his use of the HeLa cells in testing for cancer. Southam was concerned that use of the HeLa cells could cause cancer. The book says, “…some rats grew tumors when injected…” And the scientists who used them were exposed to them at all times, “Researchers were in the air around the HeLa cells, touching them, even eating lunch at the tables beside them,” the book explains. So with this problem Southam started to inject people with the HeLa cells without there consent, and observe what happened. He injected patients who already had cancer at first, and then moved on to healthy humans. He found that the healthy humans rejected the cells much faster than subjects who already had cancer. With this fact, Southam “checked” people for cancer. The book says, “Southam thought that by timing the rejections rate, he might be able to find undiagnosed cases of cancer.” All of this testing came to an abrupt stop when three Jewish doctors refused to inject patients without the patients consent. They claimed that this was the same thing the Nazis did to their ancestors; they were following the Nuremberg Code. The Nuremberg Code states, the voluntary consent of the human subject is absolutely essential. When they three doctors resigned because of this incident, it caused suspicion and an investigation was done on Southam. When it was all said and done Southam’s license was suspended for a year. In the afterword chapter the author, Rebecca Skloot, address the tissue sample issue. The tissue issue centers on doctors and scientists taking tissue samples from patients without their consent. The book says, “The samples come from routine medical procedures…They sit in freezers, shelves, and vats of liquid nitrogen.” Right now there is no law against taking tissue samples without consent, but some people are trying to change this. Scientists explain that if we do pass a bill to make them ask for tissues the research growth would drop drastically. In the end I am not sure which way this will end.These parts of the book are very interesting to me. The chapter, Illegal, Immoral, and Deplorable, surprised me. I didn’t realize that Dr. Southam did all of those experiments, like injecting them with cancer, on patients without them having any knowledge about it at all. I would have to side with the doctors who refused to do so. I feel if you are going to do test on a human, they should definitely know about it. The Nuremburg Code should have been enforced more strictly and Southam shouldn’t have just had his licenses suspended for a year. He should have had it taken away in my opinion. As far and the afterword part of the book, that was a real shocker. I had no idea that the medical community kept everyone’s tissues like that. The book explains, “…more than 307 million tissue samples from more than 178 million people are being stored in the United States.” This is madness. I never had any idea that there were this many tissue samples floating around behind the scenes of today’s medical community. I personally feel that I would like to know if the doctors took my tissue. What they test on it I don’t really care, but I would definitely like to know what they took.”

“In the chapter “Illegal, Immoral and Deplorable” Rebecca Skloot points out many of the secrets that were kept during the growth and research of the HeLa cells. Dr. Chester Southam, a cancer researcher, proposed the thought, what if Henrietta’s cancer cells could infect the scientists working on them. He tested this theory using HeLa cells and injecting them into patients that were diagnosed with cancer and recorded the results. Southam simply told the patients that he was testing their immune systems. Within hours the patient’s arms were red and swollen, and days later nodules began to grow near the injection site. He removed some of the lumps to determine if they were cancerous, but also left a few to see if immune systems would reject them or if it would spread. He also injected prisoners to better understand how the cancer cells affected healthy people. The inmates showed the same symptoms, but the men fought off the cancer completely, and with each new injection their bodies responded faster, so the injections were creating immunity to cancer.Southam stated, “The only drawback to the use of cancer cells is the phobia and ignorance that surrounds the word cancer.” This is proof that patients were never told what their injection truly consisted of because he didn’t want to scare them. Chester Southam’s case relates directly to the Nuremberg Trials from World War II. “The voluntary consent of the human subject is absolutely essential.” A judge once stated, “A physician violates his duty to his patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.” This is not always true in such a case as Southam in which the subjects were not his patients. Southam’s lawyer argued, “If the whole profession is doing it, how can you call it unprofessional conduct?” Southam was found guilty of fraud or deceit and unprofessional conduct in the practice of medicine. Another issue today is the argument on whether tissues and cells are still property of the donor after the cells and tissues have been removed from the body. Many tissues and cells are saved and stored from diagnostic procedures and do not require patient consent. Some people argue that donors should have the right to determine what their tissues are used for, but consent diminishes the value of tissue. “You can’t ignore this issue of who gets the money and what the money is used for,” says Ellen Clayton. “I’m not sure what to do about it, but I’m pretty sure it’s weird to say everybody gets money except the people providing the raw material.” But experts do not want to create profit-seekers toying with science and research. Blumberg believes researchers are entrepreneurs and says, “Whether you think the commercialization of medical research is good or bad depends on how into capitalism you are.” Lori Andrews counters this statement by arguing, “The fundamental problem here isn’t the money; it’s the notion that the people these tissues come from don’t matter.” The research Southam conducted was wrong because he lied and kept important information from the patients about the injections they were receiving. I believe that many of the people would have terminated the process if they found out he was injecting cancerous cells into their arms. Southam never had approval from any patients and I think it’s interesting that when asked why he didn’t inject himself with the cells, he simply stated that there was no need for any risk to a person of great importance to cancer research. He knew these injections could possibly be fatal and he didn’t care about anyone but his own work and progress. I think patient consent should be required in all cases, even after procedures because the patient should know that their cells or tissues could possibly be used for research. I don’t think it’s necessary for patients to specify preferences on how they want their cells to be used because then it gets unorganized and complicated. The money that is rewarded for research and development should be returned to science to enhance studies.”

We are a seminar of graduate students in US history, mostly in our first semester. Because we are preparing to be professional historians, we may have read this book differently than other audiences. In our discussion, we focused less on the aspect of professional ethics in science and more time exploring how Skloot told her story, placing the story of the Lacks family within the broader context of the history of science. We almost never agreed in our response to any particular question, so here we present a range of our responses rather than our singular ‘take’ on the book. We hope that others will find the issues we raise to be of interest.While Skloot focuses her attention on the issue of professional ethics in science, we spent a lot of time discussing her own professional ethics as an author and, more specifically whether she should be held to the standards of a journalist, a historian, or an altogether separate standard.This question is complicated by the fact that her day to day profession is somewhat of a hybrid.She has worked as a journalist for a wide variety of magazines. Her book describes her as a “science writer” who has taught “non-fiction in the creative writing departments” at several universities and as a blogger. There was a discussion of how Skloot’s background as a science writer left her somewhat unprepared for the challenges of writing about issues pertaining to race and class. “How well,” several of us asked, “did she handle her responsibility to the Lacks family both during the research process and in the writing of the book?” Our responses were decidedly mixed. One person pointed out that Skloot made the Lacks family central figures in the book. Working class blacks are usually ignored in texts; they don’t have a voice. Skloot, by keeping their experiences central, gives them a voice. She also gives examples throughout the work of how African Americans and the Lacks in particular have been mistreated. Another participant agreed: Skloot used small stories to create a context to guide readers’ understandings of working-class African Americans’ place in the story. Others built on this point, noting that the book reveals the education and information gap between different people in the United States, a gap largely determined by economic class. People speak almost separate languages, all the while living around the corner from one another in a city like Baltimore. It is a commendable act to bring this issue to light, and it shows a degree of respect for the Lacks family and their personal experiences.

On the other hand, many people (sometimes the same people) had objections or felt uncomfortable with some of Skloot’s decisions as a researcher and writer. One person pointed out that Skloot called Deborah and others in the Lacks family almost daily for a year—a kind of pressure that could be considered harassment. Another recalled that Skloot’s inquiries caused Deborah real pain and even jeopardized her health. Should she have continued? Others felt uncomfortable with how central Skloot herself was as a character in the story and thought it was a bit self-indulgent. Does Skloot, as both character and narrator, claim the voice of ultimate moral judgment? One person argued that by making herself such a significant character, Skloot implicitly cast herself as different from the rest of the scientists and journalists who had exploited the Lacks for their own gain. Does Skloot thereby reinforce the class and race privileges that allowed her to write this story, rather than someone from the Lacks family or community? Someone suggested that the story of her interactions with the Lacks family could have come in a foreword rather than structure the story. Others countered that scenes showing how hard it was for the family to talk to Skloot were essential to explaining the gulf between the Lacks family and the science community. Such scenes uncovered the material and psychological consequences of the history of scientific exploitation of African Americans, and depicted the family as complex human beings rather than as two-dimensional victims.

The other topic we discussed a great deal was, how does this book compare and contrast with a more academic style of writing common among professional historians? Most obviously, people pointed out the lack of academic-style footnotes. How we felt about the lack of footnotes, however, differed quite dramatically. Some people felt this issue made it difficult to take the book seriously, because points could not be verified or further examined. One person noticed that Skloot promised that fuller documentation would be available on her website, but perused the website and did not find it. Some accepted Skloot’s account of the Lacks family, but felt that footnotes were imperative to reveal how Skoot put together histories of Henrietta’s hometown and African Americans’ relationship to medical science. Another person noted that footnotes are part of what makes scholarship collective; historians not only use footnotes to verify sources but also as a means of taking an investigation further. Others defended the lack of footnotes, saying that the book gives immediacy to voice and speaking, and the humanity of the book is found in this quality. Footnotes would add meaning and context to the text, but would interrupt this immediacy. This immediacy is itself a sort of “truth claim” that resists critique. As scholars in a tradition that emphasizes, indeed glorifies, contextualization, we may be upset by how Skloot’s story defies our interrogations. We had an interesting discussion about how different readers establish the believability of a text. While many distrusted Skloot’s book because of its lack of notes, others found Skloot imminently trustworthy because of how she wrote about herself and the Lacks.

This led to a related conversation about what we can learn from Skloot as a writer of history and how we might endeavor to be “public historians” or “public intellectuals” or to reach a wider audience than a specialized academic one. To achieve public intellectual status, academics may make conscious decisions to write in a more provocative, more quotable, and ultimately more marketable style. We were divided about whether attention to marketability was a good or bad thing. Some felt that Skloot took liberties with source materials and made overgeneralizations to make her story more readable. We also talked about how effective it was that she followed the rule, “show, don’t tell.” We noted that in a specialized academic book, the thesis or point is expected to be very clear. Few historians end their books, as Skloot does, by telling their readers that it is not clear how they should feel about the information provided, but several of us liked the openness of this approach. Though racism is a central theme, Skloot does not discuss it in her introduction or afterward.

Giving contexts for actions and experiences is key to the historian’s craft: context provides narrative and analytical perspective. One of us noted that Skloot builds contexts by telling stories about conversations or events. Some noted that she did so by making up scenes and dialogue in ways that historians generally do not, though we also noted several instances in which historians have done so, precisely to create a more engaging read. By building her narrative around a thoroughly human story, one that is pregnant with real world ethical and political dilemmas, Skloot reminds professional historians of the power of their prose as an agent of moral inquiry. In a similar vein, one of us noted that Skloot, also like professional historians, has a commitment to creating new sources that will provide insight into the past.

Skloot’s use of a personal story to make a larger point can be an essential tool for relating the past to the present. Just as Skloot starts with the story of Henrietta and moves outward, encountering themes of racial injustice, medical ethics etc., so too our training as historians could start with a grounding in historical methodology and move outward, exploring the many styles and aspects of good writing. We look to expand our professional training by examining History in Public and the role that new technologies may play in expanding the reach and benefit of historical analysis. However, we may overlook the significance of classic forms of communication, and we seem to take for granted that we are all good writers.

Submitted by Nan Enstad, Professor of History, UW Madison, for her History 900 Seminar

The Ebling Library for the Health Sciences on UW’s West Campus recently opened an exhibit entitled “Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge” in conjunction with “The Immortal Life of Henrietta Lacks.”

Artifacts, books, journals, photographs and magazines from Ebling and five other campus collection create narratives in cases entitled, Honoring Henrietta, The Science of HeLa, UW Cancer Research (McCardle), Patenting Life, Immortal Skin (the story of UW’s Dr. Allen-Hoffman), HeLa in the Press, The Art of Healing, Human Subject Experimentation in our Own Backyard, Informing Consent, and Captive Subjects-Is There Such a Thing as Voluntary?Students, faculty, historians and family were heard to exclaim, “Great information- way to put the Skloot book in perspective, “Impressive amount of thoughtful work,” “Thanks so much for helping me to better understand [these subjects].”

The exhibit in the 3rd floor Historical Reading Room, is open the hours the same hours as those of Ebling until March 31, 2011. Curators, Micaela Sullivan-Fowler and History of Science Graduate Student, Lynnette Regouby are available to give tours for classes, book clubs, etc. msullivan@library.wisc.edu

Anyone who’s read the book and interested in discussing it is welcome to join Madison Public Library’s discussion at Central Library on Tuesday October 12th at 7 p.m. This group is an established bookgroup known for having engaging discussions. We’re also quite welcoming to newcomers. And we have homemade treats!

We’ll meet at Central Library, 201 W. Mifflin St. Madison in the Madison Room on the 2nd floor.

“The Immortal Life of Henrietta Lacks,” is garnering praise internationally. The Wellcome Trust in London has put Skloot’s book on their short list of works of fiction and non-fiction on the theme of health, illness or medicine.There is an enormous amount of excitement building over this book, we certainly hope you can join us for Skloot’s visit at the Kohl Center on Monday, Oct. 25th at 7:00.

The EPD 155 class is part of the Com A requirements and is attended primarily by students who are considering careers in one of the STEM disciplines. The class begins with a chapter from Henry Petroski’s book The Role of Failure in Successful Design (1985) to expand our understanding of how engineers use hypothesis and the scientific approach in planning and design. The class continues to explore current issues in technology including the use of social media, alternative sources of energy, stem cell development and of course cell tissue experimentation and use as described by Skloot. The first issue was to understand Henrietta Lacks and George Gey in their historical setting, which meant touching on the issues of Jim Crow laws, and northern migration patterns referenced in the book. While we looked at how Lacks was positioned without power to question authority, I also wanted the class to consider the traits that made George Gey a successful researcher, who in his time thought he was acting ethically. In many ways Gey’s characteristic are the same that the students will need to develop.

Next we focused on the ethical issues raised by Dr. Southam’s research. This lead to a discussion of the Tuskegee Syphilis Experiment, as well as Stanly Milgram’s experiment in Obedience to Authority, which we begin to frame using the Nuremberg Code and tutorials required for human subject research. A number of students became interested in bio/ethics and decided to do more research on the topic. All the students were required to write a reflection/reaction paper after each reading where they summed up the material and then ventured their opinion. For the most part the students were glad the book was chosen.

Jessica Doyle has chosen The Immortal Life of Henrietta Lacks as her October Read on Wisconsin book for high school students. Check out her website for more information about HeLa and her other book choices for readers of all ages.